adventures / advocacy / asthma / badassmatics / friends / health advocacy / life / on the road / social media

tour de good things: medicine x 2014

• by kerri

In August/September, I ventured from Winnipeg to Minneapolis to San Francisco, to the East Bay, to Santa Cruz and Davis, California . . . to simply start the journey that lead me to the campus of Stanford University. I already wrote about the people—so, here are more of the good things. . . and a chance to meet the people and hear their voices and stories, and how technology and social media, engaged patients and engaged providers are changing the realities of medicine, and more importantly, improving patient care outcomes.

Disclosure: Stanford University, Stanford Medicine and Stanford Anesthesia, as well as their partners (including the Kadry Foundation, Eli Lilly, and Boeringher Ingelheim) covered part of my costs to attend Stanford Medicine-X, including part of my airfare, one night of hotel, and a significant portion of my conference fees. As a recipient of an ePatient Scholarship in the Engagement/Producer track, I was required to produce a blog post, video, etc. to share the stories of Medicine X—but, let’s face it, I would have done so anyways :].

adventures / advocacy / friends / health + fitness / health advocacy / life / on the road / social media / stuff bloggers do / wellness

Tour de Good Things: People. | #medx 2014

• by kerri

The Tour de Good Things was a way i could summate the crazy journey I took to culminate August and begin September—both on an extremely high note. It has been nearly impossible to come down from the high that begun prior to Medicine X 2014 at Stanford University [disclosure], especially since the journey encompassed 7,227 kilometres (or about that). The last Thursday in August, I got into a car with a 60L hiking backpack of necessities and a drawstring backpack of medications, my only “prepared” travel document being my passport, and left home for 12 days. I arrived back into Winnipeg by plane last Monday after a red eye flight via Minneapolis—my initial destination.

There are many posts in here waiting to be written, and a video to come. But as many, many others have summated, the power, the magic, the amazing of Medicine X is in the people: This is a theme that would cover the entirety of the Tour de Good Things.

Minneapolis.

This kid (my cousin, Dean) headed down to University of Minnesota to start becoming an engineer of the probably civil variety, not the train variety [though, train engineers are probably also very civil]. So thanks to him I got a really long ride to the airport.

I also had grilled cheese and an awesome conversation on the parallels of asthma and T1 diabetes with these lovelies, Scott and Heather.

SFO. All over the East Bay. Santa Cruz. Davis.

My awesome aunt, Linda, and my grandma dropped me off at MSP after a 4.5 day drive to the airport […okay, the airport truly is only 8 hours from home. Not that that’s close.] and a four hour flight, I hit ground at SFO and was swept up into my “Cali-bestie” Steve’s truck, where (after picking up pizza), I FINALLY got to meet his long time partner and now husband, Doug (finally. On my third visit to the Bay Area—third time’s the charm, right? Doug is, of course, to a tee of how Steve describes him, and a total sweetheart just like Steve). We headed to Santa Cruz the next day, and San Jose where I finally got to meet his mom, Claire, his sister Sheree, and Sheree’s husband, Dan, who had us over for lunch on Monday.

The next day we headed over to Davis to get Steve’s new bass set up by a cool dude named Harrison.

San Francisco.

Steve drove me out to SF on Wednesday [because he is the best] to ensure I made my connection with my friend Carly (whom I met at MedX in 2012!) at the Twitter building. Carly’s friend Samantha was [at the time] working for Twitter, and had invited Carly for lunch—and opened up the invitation to any of Carly’s friends who wanted to come, too, which was beyond awesome :). (Samantha on the left, Carly—our link!—in the middle :].) Thanks, ladies!

Carly and I made a brief stop in Japantown after lunch and our tour around Twitter with Samantha, and then headed for Palo Alto. Not long after arriving, we had a spontaneous MedX ePatient gathering by the pool—meeting, and reuniting, with a lot of kickass ePatients—friends.

Carly and I (left, of course), [fellow Canadian!] Annette, Liza, Meredith, Dee, Marie (from Ireland!) and Michael (from England!) at the Sheraton. (Thanks to the Sheraton team member who ran out to take this shot for us!)

The next day, the fun really got started when Dr. Larry Chu [the beyond awesome MedX Conference Director!] introduced us to the Selfie Stick [here’s a professional picture (source) of Leslie, Emily, Karen, Rachel [TEAM CANADA!], myself, and Nikki selfie-ing with a selfie-stick on pre-conference workshop day!]

Of course, Ryan had to give it a go once we hit MedX full-stride—he had to make himself short for me so that a) I could adequately put my arm around his shoulders, and b) because he is too tall and was blocking the world medicine :).

No selfie stick for Brett and I, though (…everybody is SO TALL). He yelled “Oh hey, it’s Kerri!” in the corner right by the selfie station, and then we hugged, and I was like “okay we need to selfie so we don’t forget!” :]

We don’t always selfie in front of the selfie wall—sometimes we selfie in front of the gold badge door. Not only was Devon, below, a hit among the crowd at MedX, I was super excited to find another lunger on the scene [I mean, asthmatics DO hide everywhere, but… they hide].

Devon spoke on a panel about “the non-smartphone patient”, and has COPD. And, though he seemed adamantly against it before I showed him everybody tweeting his quotes, I did get him signed up on Twitter!

My super sweet roomie, Karen, and behind us, her poster presentation on the metaphorical dance that is chronic illness. Karen is a sport psychologist from Mexico and is generally amazing, so we never had a shortage of fun things to talk about :).

And on the subject of roommates, my 2012 roomie, Kim, and I—clearly in the club, and not at a medical conference. #ClubMedX

And, Miss Zoe Chu. While puppy, and not people, she lovingly made MedX granola for me and we had selfie times, so she clearly belongs on this list :].

Joe from Eli Lilly’s Team of Good People and Awesomeness (aka Lilly Clinical Open Innovation) and I—we look less like a painting in person. Probably. 🙂

And, Jerry from Eli Lilly, who was in the elevator on Thursday morning before Partnering for Health when a bunch of ePatients yelled my name and hugged me as I got on the elevator. Except we didn’t know we were supposed to know each other yet, and then he sat down beside me at Partnering for Health and identified us as the people from the elevator and said he was wondering if we were Medicine X people. Because I am all class, I was like “Yeah, we were the people yelling and hugging in the elevator—did you feel left out?! Do you need a hug!?”—he accepted this crazy Canadian’s hug, so we are clearly meant to be friends. Also, he’s awesome. And broke into a presentation during Partnering for Health when all the patients were very confused on Twitter.

Alan, Britt, Leslie, myself and Julie (Photo grabbed from Britt via Facebook!)

Sarah—one of the awesome ePatient advisors—with her CANADIAN SCARF, Rachel and I, after the closing ceremony of Medicine X.

And below, Britt (on the ePatient advisory team), Marvin—who is super sweet and I didn’t get to connect with nearly enough! :)—Rachel and I. 

And, my own ePatient advisor and friend from 2012, Chris (he’s laughing about attempting to hug me with the giant hiking backpack on)—just before Joe (below!), Marie and I headed to the airport (where I almost lost my phone and Joe totally provided an amazing Joe-hug to alleviate my stress, and told me how I could get the Delta people to bring it to me to avoid having to go back through security, since I’d left it at the check-in kiosk). 

These people—and ALL the people I met and interacted with at MedX

(I can’t even source those photos anymore :])

—are not the entirety of the story of Medicine X: but they are the part that matters most. As are the people that preceded my arrival for Medicine X to my own part of the journey, and the people who engaged in #MedX via Twitter: WE belong here.

(Photo of photo cred to Joe Riffe)

And here isn’t always a place: often, it’s a state.

And I love each and every one of you, and I hope our stories continue to connect in a way that makes a difference: Remember to not lose sight of where you were—where we were—hold on to that feeling.

We’ll change the world together.

advocacy / friends / health + fitness / health advocacy / life / social media

stanford #medx: from your couch!

• by kerri

Stanford Medicine X is “a medical conference for everyone”.

Everyone includes a lot of patients—including myself, and people like my friends Kim and Carly [and many others!] who also attended #medx in 2012 and will be back this year.

Cherise, Kim, Chris and I in 2012!

More importantly right now… everyone includes YOU—or, anybody who is chilling at home on their couch, or at their kitchen table, or anywhere there is internet, thanks to the Medicine-X Global Access Program! Through the Global Access Program you can join the main stage fun of Medicine X, check out how technology is evolving and changing healthcare, and how that is becoming more and more accessible to both patients and care providers*. Med-X is taking place from September 5th through 7th [with workshops happening before as well].  And, it’s free! [I know right?! Free is my favourite price, too]  If you’ve never attended a conference virtually before, Carly is a master: she has even written an amazing virtual conference attendance how-to guide to help make the most of your experience.

Remember: Medicine-X… is for everyone. Everyone who participates in Medicine X — whether in person or online — is there for similar reasons: We believe our stories can make a difference; we recognize the potential technology has to improve healthcare—to improve patient outcomes; to change the way we think of–and manage–our own stories that involve chronic disease or another circumstance that has caused us to more deeply invest in healthcare; in changing our own outcomes and interactions within our care. And we all believe that we can be part of a bigger story, where the patient truly becomes the centre of care—not the system.

I guarantee Twitter will be on fire, so if you’re watching from home [or work… Not that I’m encouraging that :].], ensure you jump on that before the conference if you’re unfamiliar. [My soon-to-be-roommate, Karen, even tweeted last year in both Spanish and English—clearly she is magic. She’s also a sport psychologist and also has asthma, so we were totally meant to be roommates and I’m beyond excited to meet her.] And, while I could tell you what I’m excited for on the main stage, we might be here all day: so check out the program here and get stoked yourself!

Curious? Check it out. Register. [Remember, it’s free.]

And if you have questions, ask away below, or on twitter at #medx—we’ll help you out.

 

*Access to technology among providers in the Western world probably varies much on your geography/medical system. Just because it’s available, doesn’t mean that—for example—iPads are popping up in Canadian hospitals. Here in Winnipeg, electronic charting is sometimes either a) a new thing, or b) not even happening yet.  Which is among reasons why having international input and attendance at these conferences is so important: we can’t improve care through technology we don’t have access to—and, beyond financial constraints, knowledge of value in application is the other huge barrier to integrating technology to improve patient care, or improve the lives of all people. Knowing what I know, I shouldn’t have been shocked when my new-ish gynaecologist, Alaa, pulled up my pathology report on his computer at my first appointment. And I should probably stop being so shocked when I find someone I know wearing a Fitbit or using MyFitnessPal. And, for those of you Canadians who are in this boat with me, don’t worry: there are a handful of Canadians in the crowd, and we’ll do our best to get our voices out there, too.

ADHD + learning disabilities / being a student / friends / kinesiology / life

graduation: the start of a new chapter.

• by kerri

i crossed a line five years in the making
that the biggest eraser can’t clear.

–this is the sweetest little song, butch walker. 

 
 Photo credit to Amber

Five years, and far more stories than I would have ever imagined.
Today, I close this chapter in the story and move on to the next one, with the storyline embedded deep within me.
 
These five years are worth far more than a piece of paper and these pictures. The last five years are the story, the experiences, the process. And this day, this piece of paper may symbolize that I can put the things I know onto papers and into practice, but only to an extent.
The degree, Bachelor of Physical and Health Education, implies much about what I have learned outside of myself: in no way can those six words even begin to indicate what I learned inside myself and what I—and those around me sharing this story–changed inside myself. And that the change inside me is far more crucial to my ability to connect with others than most things I could ever be assessed on.
 
The last five years are not about this moment: they are about the collection moments that lead me here.

connect the dots there is a picture in these lines
my favourite parts of life are in the nights of better sleep i never find.
but even if i don’t decide to chase my dreams, i won’t throw them away
[…] i won’t forget everything i wen through to get here
but i haven’t decided if here is quite where i belong.
—where i belong, farewell fighter
 
 
They are about the process.
 
 
 
The people.
 
 
 
 
 
Photo credit to Becki
 
 
 
The story.
 
 
And what’s ahead.
 
Note: I’ll be updating this post with more pictures/quotes over the next few days… Check back :].
ADHD + learning disabilities / friends / guest posts

guest post! | kat’s story – neurodiversity: dyspraxia edition

• by kerri

Though I lacked a formal term in my lexicon, the concept of “neurodiversity” (though somewhat controversial) is one that I’ve appreciated since long before my own ADHD/LD diagnosis. Typically, neurodiversity is seen as a concept that seeks to portray a variety of neurologically based “disorders” simply as variations—these include ADHD, autism spectrum disorders and Tourette syndrome, as well as specific learning disabilities. Another condition under the umbrella is dyspraxia—one that is probably less generally understood than several others on the list. 

I connected with Katherine (whom I always refer to, in my head and out loud, as Kat) several years ago—we connected initially over asthma, but that’s a rarer discussion topic at this point! More often, we’re planning adventures, spending several hours on Skype telling stories, discussing school, or making mug cake (yes, we made mug cake together on Skype—the level of coaching I required was ridiculous, and Kat’s a good person who didn’t make fun of me—too much :).]

Today, Kat is sharing her perspective as an adult with dyspraxia—a developmental delay affecting motor coordination. Dyspraxia is seldom discussed in the context of adulthood, so I’m excited to have Kat here today!

———-

Hello, my name is Katherine and…

I am a computer programmer.

I am learning American Sign Language.

I am a knitter.

I am a book worm.

I am a condo owner.

I am a Cardinals baseball fan.

I am dyspraxic.

My story of life as a grown up is much the same as any other 25 year old female living in the midwestern United States. I do exciting things like go to work, cook dinner, hang out with friends, and explore diverse and varied interests. However, my brain and I occupy a different motor skills space than yours most likely does. In the early/mid 90’s when I was a preschooler/grade schooler I had motor skill developmental delays. At the time the doctors called it dysfunctional/disordered motor planning, at the time new politically correct version of “clumsy child syndrome” which is now commonly know as dyspraxia. Basically my neurons don’t always connect my muscles to my brain well. Sometimes the message gets through and my body works just fine, other times it gets lost along the way. My writing skills are slow, painful, and took exceedingly long to develop. PE was my least favorite class ever; they always passed me but noted a need for improvement of coordination in activities like running, skipping, and jump rope.

In some ways getting to high school, college, and now the “real world” is easier. I’m no longer graded on my penmanship, and no one expects me to write in cursive. Nor does socialization involve jumping double dutch, although walking in heels is equally perilous. The majority of my work and other written communication is keyed out on a qwerty keyboard of some sort. While learning to type was a challenge initially I’ve taken to keying by touch much better than I ever had to writing. You won’t hear many stories like mine because I’m from the US, seemingly few dyspraxics exist Stateside (UK seems to have cornered the market). Also much more common in males for whatever reason. I’m a grown adult who has found a successful contributory place in society.

The voice of adults with developmental delays is seemingly nonexistent. Not because we aren’t here, and no, we didn’t outgrow it. Turning 18, 21 or any other arbitrary age doesn’t magically catch you up to your peers. Some of it is that we’ve learned how to adapt our lifestyles to avoid skills we haven’t mastered. My cooking has never been dinner party elegant but it tastes just dandy. I’ve found cooking implements that don’t require lots of coordination to work (OXO make some real winners at least for me). I drive a stick shift car of the same brand as i first learned on (so it has the same sized gear box with a clutch that “grabs” similarly). If I’m tired or have a mentally stimulating day ahead of me I don’t drive. Quite simply, while I can drive it takes quite a bit of mental concentration to drive, follow the assigned route and otherwise be attentive to my surroundings. Somedays this is more than I should really take on. I know my limits and live close to a transit loop. My life looks like that of the neurotypical adult because pick surroundings and activities that suit my needs and abilities.

Life is learning and growing and changing the world around you to make it work. Taking it in stride when you trip over your own feet stone cold sober in trainers.

—–

Kat has a degree in computer science and works as a programmer—she is pursuing American Sign Language as a personal interest (but in the very ambitious form of evening university classes—and watching the videos for my Disability Studies class in the Fall). Kat’s “diverse and varied interests” include several different fitness pursuits (running, cycling, swimming . . . ahem, triathlon :] . . .), making me jealous as she goes to Chicago, and crafty stuff like knitting and—though, I think this has culminated—having all sorts of condo do-it-yourself shenanigans.  

Kat can be found on Twitter as @kat314159 […yes. That is pi there. No, not that kind of pie].